Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.
Department of Human Centered Design & Engineering, University of Washington, Seattle, WA, USA.
Disabil Rehabil. 2020 Nov;42(23):3306-3315. doi: 10.1080/09638288.2019.1592243. Epub 2019 Apr 18.
The purpose of this research was to examine the lived experiences of adults with upper limb absence, specifically the interplay of device use, ability, and quality of life through semi-structured interviews. We sought to draw insight from these experiences to improve the practice and perceptions of adults with upper limb absence, prosthetists, and technology designers. Semi-structured interviews were conducted and interpreted with phenomenological analysis for fourteen individuals with acquired or congenital limb absence. Through an interpretive phenomenological analysis approach, researchers employed an inductive approach to coding and identification of central themes. Participants shared high perceptions of ability and function, regardless of prosthesis or assistive technology use. Life experiences related to three dimensions strongly influenced perceptions of ability: (1) learning to live with upper limb absence, (2) developing their identity, and (3) connecting with their community. The diversity of experiences across participants highlighted the limitations of identifying "normative" pathways of recovery or device use, emphasizing the need for flexible and adaptable systems that can creatively support personal goals and needs. Integration of novel platforms for professional practice, supportive communities, and technology innovation can support the evolving needs and care of individuals with upper limb absence.Implications for rehabilitationIn this study, perceptions of ability were largely independent of prosthetic use and each individual developed a unique toolkit of devices and strategies to support function in daily life.Clinicians can support perceptions of ability by promoting opportunities for community development and life-long learning.Informal communities, such as online networks, can provide novel device designs, resources for learning, and societal awareness to empower individuals with limb absence.
本研究旨在探讨上肢缺失成年人的生活体验，特别是通过半结构化访谈，研究设备使用、能力和生活质量之间的相互作用。我们希望从这些经验中汲取灵感，以改善上肢缺失成年人、假肢矫形师和技术设计师的实践和认知。对 14 名因后天或先天原因上肢缺失的个体进行了半结构化访谈，并采用现象学分析进行解释。通过解释性现象学分析方法，研究人员采用归纳法对参与者的体验进行编码和识别主题。参与者无论是否使用假肢或辅助技术，都对自己的能力和功能有着高度的认知。与三个维度相关的生活经历强烈影响着对能力的认知：（1）学习适应上肢缺失的生活，（2）形成身份认同，（3）与社区建立联系。参与者经历的多样性突出了确定“规范”康复或设备使用路径的局限性，强调需要灵活和适应性强的系统，以创造性地支持个人目标和需求。专业实践、支持性社区和技术创新的新平台的整合可以满足上肢缺失患者不断发展的需求和护理。
在本研究中，能力认知在很大程度上独立于假肢使用，每个个体都发展出了独特的一整套设备和策略，以支持日常生活中的功能。临床医生可以通过促进社区发展和终身学习的机会来支持能力认知。非正式社区，如在线网络，可以提供新的设备设计、学习资源和社会意识，赋予肢体缺失的个体权力。
